Alistair shared his father’s story with us about the lack of care and coordinated thinking in his father’s case. It’s a seeming lack of concern for a frail and vulnerable man – and it shows how people in care homes can be invisible to the wider NHS.

His story highlights how, in this context, the care system puts patients at serious risk of harm.

Alistair also makes an interesting comparison between his father’s ‘care’ and that of his dog.

(Names have been changed to protect the father’s identity.)

Alistair explains…

Five months ago, my father who is 92 and lives in a care home in the south east of England, was taken ill. He said he had diarrhoea and stomach pains.

As it happens, at the same time one of my elderly dogs had a similar problem and we took her to our vet.

The care home monitored my father, as the staff said that this happens often with the elderly and they often recover after a few days. However, they didn’t think there was much wrong with him. A week later my father said he was feeling worse.

In the meantime, the vet had now thoroughly examined my dog and said he was not sure of the precise problem. Further tests were needed, which included a stool sample. He gave her an analgesic to help her with the discomfort.

After three weeks my father was now losing weight and said he was having to empty his bowels after almost every meal, but the care home said they still had no evidence of diarrhoea.

The results of my dog’s stool test came through from the Path Lab the following day, by email. She had a bacterial infection of the small intestine. The vet gave her antibiotics and within five days she had made a full recovery.

After a whole month, the care home decided to send my father to the doctor, who concluded that he could not find anything wrong with him. He thought my father may be making it up, but as a precaution reviewed and modified my father’s medication for diabetes and gave him anti depressants. He also arranged for a stool test to be undertaken. The test came back 10 days later as ‘negative’. It now also turns out it was the wrong test.

My dog is now ‘full of beans’ and has now resumed hunting and spends her days chasing rabbits.

After another month, my father is finding it difficult to walk, has lost 12 kg and says that he has constant diarrhoea and feels very ill and spends most of his time in bed. I phone the doctor who reluctantly talks to me. He says there is not much more he can do, but maybe my father should have a colonoscopy. He said he would arrange this, but the waiting list is more than two weeks long. He said he saw no point in visiting my father as he was being well cared for.

My dog catches her latest rabbit.

My father’s condition further deteriorates. He loses more weight and can hardly move or speak. He is getting no treatment. It is now three months since he became ill and we still do not know what is wrong with him! If we don’t know what is wrong with him how can he be treated?

I decided to seek private help and made an appointment at the local private hospital for my father to see a specialist. The next day I took my father to the hospital and paid £150. After 20 minutes the specialist concluded my father most probably has complications as a result of the winter vomiting virus he had in August. He gave my father a prescription to coat the lining of the small intestine and wrote to my father’s GP suggesting a further stool sample be taken.

He ruled out a colonoscopy due to my father’s fragility. He also recommended a number of medications that could be given to make my father more comfortable, should the first medication not work.

My dog catches her second rabbit.

The stool sample was sent to a London hospital. My father’s condition further deteriorated. He is now spending most of his time in bed asleep, exhausted and now totally incontinent. He was moved to the nursing floor of the care home – for an extra charge.

After a further phone call I eventually persuaded the GP to visit my father. He concluded there is nothing more he can do, as he says my father is well cared for and we have to wait for the results of the stool test (which he then said he had never heard of – and that he would not be able to interpret the results).

Today my dog catches a squirrel.

My father was now at death’s door and when we visited him he was always asleep. His weight continued to drop – to 61kg from 77kg in three months. After three weeks there were no signs of the stool test results and the GP refused to chase them, saying we have to be patient and “the results will come when they are ready”. One of the care staff at the home phoned the Path Lab to chase the results but they said they would only speak to the GP, who was now on holiday for two weeks.

The receptionist from the vet phoned me as part of their follow up to ask how my dog was.

We were expecting my father to pass away over Christmas. In a last ditch effort to save him, I phone the GP’s locum, who phoned the Path Lab and chased the results. The results arrived on Christmas Eve by fax saying my father had raised calprotectin levels, and suggestions for treatment were made. My father received his first medication later on Christmas Eve and we hoped it would work. As it happened it made matters even worse.

Dare I say the moral of this story is that if you are old and ill in this country, you can expect better treatment if you are a dog. My father has unnecessarily suffered pain, distress and humiliation for months due to the failure of our National Health Service.

Further update from Alistair:

My father has a new GP, and this is the note I recently sent to the new one:

“I visited my father yesterday, and he seems to have taken a downturn. A small piece of cake caused severe diarrhoea within five minutes of eating. It is possible that this may be a reaction to dairy cream which was given to him yesterday, despite care staff knowing he should be on a non-dairy diet.

As we have no notes, due to the change of GP and for the unbelievable fact that the new GP cannot have his notes for up six weeks (why?) and the almost certain long wait for a NHS specialist to examine my father, could you please advise me of a reliable private consultant that you work with, so that I may make an appointment to have my father examined.

I am deeply concerned that four months after the first symptoms appeared we still do not have a precise diagnosis. I am not prepared to stand by and let the system kill my father.”

Alistair continues…

I have been informed that if you change GP’s the new GP has to request your notes, by letter, to the NHS local HQ. They then write to the old GP and ask for the notes. Then, once a week, a courier collects the notes from the old GP. They then go to a central NHS ‘Post Office’ where they are sorted and then sent on to the new GP. This can take six weeks!

I phoned the ‘NHS post office’ today and asked why they are using such an antiquated method and was told, “That is the system.” I asked why the old GP couldn’t just send the notes to the new GP – and why the notes can’t be online. Both questions were met with hysterical derision. No wonder the NHS is in such a mess.

I have made an official complaint, and NHS England is undertaking an urgent investigation.

After weeks of chasing, the GP finally informed me of an appointment for my father with a gastro consultant at a local hospital. The problem is that my father is now so ill that he is bed ridden and doubly incontinent. They want me to get him to the hospital, in the freezing cold, so that the consultant can talk to him where the consultant works, for the convenience of the consultant. There is no way that anyone will visit him in the care home. This is like living in Dickensian times.

——-

Alistair’s story no doubt resonates with many families up and down the country who may also feel that the care system puts patients at serious risk of harm. At the same time Alistair is also having to battle for NHS Continuing Healthcare funding for his father.

If you’ve come up against a similar situation or have a comment about this, please share your thoughts. What can we do to make things better?

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15 Comments

Final part -Effectively they made my Mother homeless. The CCG nurse took absolutely no responsibility for breaching confidentiality. She then found a home that was 35mins drive away! and she told the new home manager that faith and trust had been lost between me and the clinical lead, she also went onto advise the new home that the family are ‘heavily’ involved.. I was shocked, she was not acting in my Mothers best interests and i highlighted this. we as a family had no opportunity to justify our position, she had not given my Mum or the family the greatest start. The new home manager came to assess my mum, she gave me the opportunity to tell my side of the story. She asked me the following questions, I hear that trust and faith had been lost between you and the clinical lead, what happened? I also hear that you are all heavily involved? I wouldn’t want you to be lovely to my face and then say something else behind my back? I couldn’t believe it. It felt so unfair. The following day after she had assessed mum, she responded to the CCG nurse and told her that we do have beds, but we have to accept more complex residents as a priority, when a bed becomes available we will let you know. I have all of the evidence for this. I am in the process of raising a formal complaint to the CCG, i haven’t sent this yet, as i want to ensure i know my mum’s rights, they will also act on my behalf to the nursing home. I am looking for any supporting advocates who specialise in such matters, anything that would guide me on the best route to take this to the top
Final part Thanks

Part 4 Exactly 24 hours later, on 25 may, like a bolt from the blue i receive an email from the clinical lead accusing me of allegations that i had made against her, she refers to an email that had been circulating which suggested that i had no faith and trust in her decisions as the clinical lead, and therefore she would not be accepting Mum back into the home, she then went onto say that its because she cannot meet mums needs. Then her email was backed up by other management team members. . After 3 emotional pleas (To clinical lead, head of q&c and CCG Nurse) to ask for a meeting to discuss the concerns so that i can justify my position, they were refused. THe CCG nurse was bias, and seemed she sided with them. The home then went onto send an eviction notice stating that we would need to empty the room within 7 days otherwise they would begin to charge us £75. Part 4 of 4
Sorry one more part

Part 3
——The CCG nurse forwarded this exact email to the very email with the highly sensitive information about the clinical lead, to the clinical lead and the home manager, stating that the clinical lead would be the best person to come to the hospital to re-assess, and to bring mums named nurse—–. I was mortified, and immediately sent an email asking why she did this! That it would ruin the relationship with the nursing home now! She didn’t seem to think it was an issue (at this point my Mother is already deteriorating, shes on potent antibiotics, and fighting for breath, family are distraught about her health). The clinical lead responded to that email offering her support to me and said she would bring the named nurse. So this to me was an indication that she hadn’t read the trail, but the home manager was still copied in who was on coming to the end of her A/L. They came to assess Mum and we had a meeting with the ward sister and a ward nurse who was looking after mum. They agreed that the nursing home could continue to use the current care and nursing plan with some small tweaks. So there was nothing in that meeting that things had drastically changed. Only change was that Mum was under SCP and they would receive further support in caring for Mum. That day both clinical lead and named nurse saw mum and thought she was fragile, the clinical lead saw how drained i was and said that i should get some rest because i looked drained out. So this was yet another indication that there was actually no breakdown between us, despite my frustrations.
Part 3 of 4

Part 2
I soon realised that the home had never really looked after someone as complex as Mum before, of course i began to question the clinical lead’s ability to make decisions on my Mum’s clinical needs. Anyway getting to the point now. This recent hospital admission was a lot more serious and now Mum is under the Support Care Pathways (SCP), which falls under the Palliative Hub. It was recognised by the hospital respiratory consultant that Mum had been deteriorating with the amount of admissions she had. She was frail and so vulnerable. Based on the clinical lead’s previous re-assessments at the hospital, I sent an email in complete confidence to the CCG nurse responsible for Mum. Highlighting the seriousness of Mums current condition. I also highlighted some really sensitive information about my concerns around the clinical lead coming back into assess Mum at a sensitive time for the family. I raised the fact that i did not want her to come alone as i didn’t trust she would understand Mums condition based on previous re-assessments, i asked if she could bring mums named nurse at the nursing home (specialist background in respiratory care), or that the CCG nurse came in herself to assess (She refused). Bottom line i either didnt want the clinical lead there or i wanted her to come with another nurse.
Part 2 of 4

Part 1
Hi RE: Revenge eviction as a result of CCG nurse breaching confidentiality by sending a highly confidential email about the clinical lead.
Mum is not mobile, unable to communicate and is complex care. NHS Continuing Healthcare (CHC) funded since Jan 2017. The first home she was in for 7 years, last year they advised she couldn’t meet her clinical needs anymore.
I found 2 nursing homes for mum. CCG managed the handover. She moved in in Sept 2017. It had a fantastic CQC report. But within 5 days Mum was admitted to hospital. We thought ok, she’s probably suffering from stuff from the previous home. She was in for 5 days. Then she was admitted into hospital again in Oct, Dec, Mar, Apr and May. All acute and complex conditions with new additional symptoms, this was not the usual frequency. I raised my concerns with the home’s clinical lead, and we had open discussions about this, we got on well. Communication was breaking down, and nurses at the home weren’t aware of how complex mum was as they were so laid back when dealing with urgent situations, which led to further deterioration, and it made me question whether the clinical lead misjudged mums needs in the first place.
Part 1 of 4

My 85 year old mother was taken into hospital after suffering from chronic diarrhoea for 2 weeks. She lives alone and has mobility issues but has been able to cope with our support (cleaning, shopping, meals delivered) and the support of carers twice a week who help with washing her. Up until recently she has been very much mentally alert after working (albeit part time and from home) until she was in her 80’s! The hospital carried out a number of tests and promised that she would not be sent home in the same condition. The tests they carried out included a colonoscopy (for which she was starved for 48 hours as the appointment was put back). They also gave her intravenous antibiotics by mistake that she was allergic to and she is still suffering from an allergic skin reaction. They tested her stools. They discharged her saying that her condition had improved. It had not and we are really none the wiser as to what is wrong with her other than that it is a pancreas condition and inflammation/collitis. Whilst she was in hospital, I cleaned the house and all her carpets. She has been out of hospital for 2 weeks now with exactly the same condition. The carpets are covered in stains. We are constantly cleaning the toilet and commode and doing our best to cope with the situation. She does not have a downstairs bath or shower and can only use a hand basin to wash. She cannot live with us as we do not have a downstairs toilet (although we had planned to sell both homes and try to find somewhere to live together, but this takes time and there are other considerations). I am at my wits end as we are in exactly the same situation as we were in 2 months ago when all of this started. She should not have been discharged to cope alone with this condition. She has seen her GP and followed all advice re medication to no avail. I wanted her to be taken into a care facility until this illness is sorted out because we have been advised that she is not incontinent, just unwell. I felt so badly let down 3 years ago when my 84 year old father died of cancer (which I could see was killing him and which the GP apologised for not knowing about) – by the time he was seen at the hospital we waited 3 hours for him to be told he had weeks to live (it was actually days and I could have told them that by just looking at him and without any medical training). Now my mum is being left to suffer in a way that we would not treat our dog and she would not have treated any of the family dogs we had (which is why this post struck me as so poignant). Neither she nor we have the funds to pay for ongoing private care and yet out family have never asked for anything in their lives. If an animal was left to fend for itself in this condition there would be public outrage. Why can’t people see that we will all be there one day and anyone could find themselves in similar circumstances. It is an outrage that our society allows such things to happen to elderly people or those in need of support.

Some time ago the Liverpool Pathway was condemned after much out cry at least it only lasted a week or a bit more. We are not allowed euthanasia, you cannot cause an animal to suffer, but elderly and disabled elderly people were being asked if they wanted resuscitation or not, not a kind discussion, just a straight question on a tick list out of the blue, having just had major surgery and intensive care twice. Discharge to nursing home before going home.and asked that.
If the government wants to kill us off fine! Just give me a few days to sort out my life and I will take it! They have brought in the new Care Act and I breathed a sigh of relief. I was safe. My needs assessed, discussed and implemented, and it worked. Life has not been easy. I was disabled for 15 years before asking for help. I was assessed and had a great care plan. It worked and when I hit problems I would phone social services and they would say they would phone back. Only one person did in several years. I had one assessment late; social worker was happy all was well. Suddenly no money for care in my account. Social worker came and said care package was withdrawn until I proved I still had my long term conditions. She saw no evidence of them. Another meeting was arranged with people who know me well and help me. As she entered she presented me with a letter undated claiming back £4,000 of care but no written explanation. I had provided every receipt and explanation for everything. She stated my care pack was wrong and I shouldnt have been given it. It was drawn up by a broker on behalf of Social Services they agreed it and paid. With no warning it was all stopped. She understands the rare disease that is blighting my life. I have had it all my life but was not diagnosed till I was 71. Good because all over the world experts would love to hear from her. The same department have have installed a bath for another long term condition but as she sees no evidence of it? Good care? All support is withdrawn. She started cutting budget by two thirds. Then taking it out of my control. I am forced to accept what is inflicted. I do not have the strength. Accused of what? Demand for money when they know I have none? But no paperwork to explain? How do I defend myself? I had been so careful – everything accounted! Punished by withdrawal of care? Weeks, months and my pa to help me gone. I am in a serious situation and terrified. Why not just give me a pill and save all this hassle and mental torture? Step off the world, I would jump! Bring back Liverpool Pathway. It’s probable one could DIY well. No one is helping.

My mother in law has been turned down for Continuous Healthcare Funding as she does not meet the criteria even though I flagged up at the Assessment that her health and mental needs were not being met by the NHS or Care Home as I know she is on the Autistic Spectrum and as such her needs are very ‘different’.

I stated at the assessment and it was documented by the Continuing Care Needs Assessor that I believed she is Asperger. The Care Home Manager will not recognise it because she has no formal diagnosis so her needs are not met.

Now I am going through the process to get her diagnosed privately and am appealing against the local CCG refusing her funding as she is just as entitled to funding as the Dementia clients in the home who do receive it.

There is a really good presentation on YouTube by Luke Clements cardifflawschool which outlines the laws around NHS Funding. There are also 39 pages on Martin Lewis “over 50” forum full of people trying to fight this unfair system. Some have won their cases and share tips. If CCG Assessors do not follow the guidelines and disallow funding they are guilty of theft – which many seem to be.

This story above so closely matches the idiocy of the NHS in my father in law’s case.

First, his two year old thigh level amputation failed completely. NHS CHC assessors did not even look at the failing stump some weeks earlier when pronouncing that he had no health needs and so did not require funding.

Soon afterwards he was admitted for surgery, planned for over six months previously, to correct it.

The Nurses at the hospital did not give a just awakened from surgery brain injury dementia patient post operative meds because he waved them away as he does with paracetamol at his nursing home.
In the next few hours he had two seizures and died each time.
They stated that his notes said he was able to make his own decisions. I asked them if they would be allowed to make decisions to prescribe and administer the meds if they were immediately post operative, Infected to the point of dementia and drugged on a dose of morphine…. You know that they said “of course not!” It still did not ring the bell that similarly a patient might also have problems making decisions too.

Then he went back to his Nursing home.

His wound failed again within days. The home staff delayed getting the GP to look at it. They just renewed the bandages. The GP dithered for over a week.

Later on he was admitted to Hospital by ambulance. His thigh bone had erupted through the end of his leg.

He had gained an MRSA infection and gangrene in the wound.

Before we could even get to the hospital he had been sent home because he had refused treatment…. Brain injury…… Dementia….. Massive infection, Morphine enough to kill a horse and a UTI too…… Does the NHS train them to be incompetent or just employ the one’s most likely to fail to rise above that level of competence?

For more than two weeks he laid in bed with teenage nursing home carers (Bless them!) doing the work of doctors and nurses.

The GP would not send him back to hospital until he agreed to have further surgery. Every time he awoke and discovered the wound and the bone poking out, he believed that the surgery had failed again and again…. “groundhog day” style…. But the GP would not accept that was what was happening.

Eventually he was readmitted so that he could have his leg shortened again and the infected tissue excised.

Pain, distress and the risk of preventable death for several weeks was not amusing for us let alone him….. Thankfully he lost most of his reasoning and cognition throughout due to infection and weeks of increasing morphine doses.

Last week I participated in a meeting with an NHS assessment nurse and my father, who is in a nursing home, to see if the NHS would contribute to my 92 year old fathers nursing fees. She produced pages of a tick box score system which apparently goes to a local panel of ‘professionals’ for them to decide if they would provide funding.

My father is currently bed ridden, doubly incontinent, unable to feed himself and can hardly move. Yet I get a phone call today to say that ‘the panel had met and deliberated my fathers case, and had decided that he was not entitled to any funding because he does not meet the criterion’

One has to question just how ill do you have to be to meet the ‘criterion’?

it was quite clear from the start that the scoring method was crudely weighted to ensure the NHS gets away with paying nothing. For example; my father, double incontinent and bed ridden On that page the score was ‘MODERATE’ as it was for most other pages as there is a higher level of illness with the classification of ‘SEVERE’ In this case, to qualify you have to have a daily surgical procedure for your incontinence!

How can a government department get away with such cynical trickery and treating people as idiots? The meeting was a charade, a waste of everyones time and I wonder how so called ‘professionals’ can bring themselves to participate in such a dishonest sham.

I now realise that this is going on across the country and most of it is illegal. This needs to be challenged, maybe through a ‘Class Action’. In an Election Year this could have very serious ramifications and well deserved payouts to all those who have been shafted!

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